I have this friend. Her name is Fenn. (It’s not, she’s known by all manner of names, but to me she is Fenn.)

We ‘met’ online over 10 years ago on a website called The Bad Mothers Club. It was pre Facebook, pre Twitter, pre Facetiming, skyping and instagram. A vine was still something that grapes grew on to make delicious wine. Forums were the thing and my family thought I was opening myself up to being murdered by a stranger.

Fenn was one of the big girls on the forum, thoroughly intimidating but in a cool big sister way, not a mean girls way. (She never told me to wear pink on Tuesdays). So we chatted, we found ourselves on the same threads and we talked shit, made terrible jokes and mainly were honest, struggling mums who could tell it like it is. I met some bloody wonderful people on that forum, many of whom I still speak to today, all in the premise of being bad mums. We weren’t and we aren’t. But we found peace in having the ability to share our parenting woes with like-minded individuals.

I always liked Fenn, we clicked and I knew I would make her mine and call her squishy. Months of forum chat turned into emails and private messages where we would talk about anything and everything. It was a really isolating time for me. I had three kids under 5 and a husband who worked away, Timm had just started working for the Arctic Monkeys and was touring for 9 months a year and I was home alone with the kids. I had been diagnosed with Ulcerative Colitis 2 years before and during flare ups, I would barely leave home or speak to other human beings.

Our first phone call was nerve wracking, the premise of it was that she was going to help talk me through understanding Paypal. Don’t mock. It was all very new!!! An hour later after her banging her head against the wall in frustration of speaking to a tech-phobic moron, we were laughing and chatting as though we had known each other forever.

We first met in person when I took the train to her home town to stay with her. This goes against all internet safety warnings, but after a year or so of chatting on the phone we made the leap. I remember sitting on the train and thinking ‘fuck, what if we hate each other??, what if we have nothing to say?’. I needn’t have worried, we hugged, went back to hers, drank rosè and talked for hours.

Our friendship over the past ten years has seen us through raising 5 kids, relationships breaking down, new loves, illness, surgeries, heartbreak, new loves, new careers, six years working together at Leeds festival, our lowest lows and our highest highs. We live 100 miles apart and don’t get to see each other nearly as much as we both wished but this girl is my love.

I don’t think I would be here writing this blog if it wasn’t for Fenn and her ever helpful tech and social media advise. She is creative, artistic and ever brilliant and you need to go take a look at her work at Sex, Death, Rock n Roll (yes, that IS the best blog name ever).

Today is her birthday and I think you should all go over to like her Facebook page and wish her a happy birthday for she is bloody wonderful.

Friendship comes in many different ways, often when we least expect it. For years, people would say she was my “internet friend” as if that meant she weren’t real, as if the fact we met online negated from any real life connection. We live in a time where we can connect with other people from all over the world in ways never experienced before, that is a wonderful thing. Of course we need to keep ourselves safe, but the internet opens life up and gives you the ability to make friends that can last a lifetime.

Fenn is my true friend. She makes me happy, she talks me through my sadness, she is my shoulder to cry on, my partner in crime and my support. I love her very much and truly hope that I have made her cry as she reads this! 😛

A few years ago, I trained as a masseuse and got the opportunity to go to Leeds festival and be their backstage masseuse for artists. As I had a massive panic attack about it, I knew there was one person to talk me down and be by my side. Together we did 6 years, hanging out with rock stars, giving eye liner to American punk boys, feeding lolly pops and cider to indie bands and generally having a fucking amazing time.

The last time we did that was in 2013. I was ill. I had been ill for months and knew I wasn’t well enough to go but didn’t want to let anyone down. When we arrived there was confusion, problems with work space, a back stage manager who was trying to fuck us over (don’t ask!!) and a lot of stress. I managed the first night and then between us, we had had enough and went home. The next day I was admitted to hospital and I didn’t leave for two and a half weeks. When I left, I no longer had my colon.

My wonderful Fenn, I want to thank you for those 6 years. We had a blast didn’t we?! Josh Homme calling you ma’am, Jarvis Cocker, the Axl Rose debacle, the Beth Ditto debacle, nearly taking out Dave Grohl with a swedish wooden throwing game, you getting me to meet Pete Doherty, hanging out on buggies, sleeping behind the main stage with a stage light for warmth, telling Chung “celeb gossip” about Gok Wan to realise it all came from Pop Bitch, the lovely coffee, the dining with stars, the case of the stolen guitar that we solved like punk Miss Marples, Jack Black, the year of the weird yogi and his life in a cave, the shaming of those who thought we should know who they were, the laughs, the tears and the cider. Always the cider.

I should probably mention now our one and only argument. It involved drunkenness, tents, cameras and a bottle being thrown at my head… It was magnificent!

You are a gem, you know. You deal with so much and you are an inspiration to so many. Though times are tough and you have a lot on your plate, you are always there for me and I am truly grateful. You know what else I am grateful for? That fella of yours. Thank you lovely boy for making my girl the happiest I have ever seen her. It is a real joy to see you together.

We keep promising to do more work together, then life, kids, illness, stress gets in the way. I don’t stress about it though, as I know we are going to do something amazing together at some point. We are both so fucking awesome that it would be a travesty for it NOT to happen!

From the humble beginnings of a tiny corner of the internet to where we are now, I am so glad you are part of my life. I hope you have a marvellous birthday, I only wish I were closer so I could come and clink a glass with you. We will be friends to the very bitter end, when we are old punk biddies in amazing costumes with bright pink hair and kick ass shoes.

And that is why, my love, when I renewed my wedding vows to my Timm last year after the worst times of our lives, there was only ever one person who I could have had to perform the ceremony. Thank you for being such an integral part of such an important day. I love you.

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After years of complex health issues, multiple surgeries, too many medications to name and months in hospital, I thought getting a flu jab would be a simple, fuss free event. It started when a nurse in hospital clinic asked in passing whether I had had my flu jab this year. I said I had never had one and she was surprised and asked me to see my GP and arrange one.

My immune system is shagged and I catch everything going. I caught flu a few years back and spent a week in hospital. Anyway, I pondered this and asked on my Facebook page whether other people with IBD had flu jabs. The answer was a resounding YES! And so I called the GP and asked the receptionist if she could check with a doctor if I should have one. She said she would check and call back. She did not call back.

So when I was seeing a GP recently, regarding my pouchitis, I asked her and she thought I should have one. She said she would check with another doctor and let me know. Last week I got a phone call from the surgery asking me to attend this week for my flu jab! Result!

Today I trundled along to the GP surgery for my 10.15am appointment. As I was called through, the health care assistant looked at the screen and asked why I was having this. I replied that I have Ulcerative Colitis and have had my colon removed, that I had a rubbish immune system and that it had been recommended by doctors.

She shook her head, stood up and left the room. She returned and said “Well, you shouldn’t be having this but seeing as you are here, we will do it but only this one time!” I was quite surprised and asked her why I had been called in my the surgery for this appointment, if I didn’t need the shot? She said she didn’t know.

I asked if I shouldn’t be having this because it was bad for me, she said I wasn’t on the list of reasons to give the shot. She appeared a little angry with me but I wanted to be clear on whether I should or shouldn’t have it and so I questioned again why I had been called in for this appointment. She said it wasn’t the doctors here that had asked for it, I said it was, and tried to explain about seeing the GP. She rolled her eyes and stood up, asking if I wanted to have the jab or not.

She was quite aggressive. I said to her “Look, I’m not sure why, but I feel like you’re being a bit weird with me and I am just trying to ask what the confusion is.”

“I am not being weird!” she said loudly. She was actually being aggressive, but I didn’t want to use the word ‘aggressive’. She then took the cap off the needle and stood over me, saying “are you having this or not”. I looked away and said “fine”.

She then span round and walked out, holding the needle. I was a bit shaken and so stood up and put my coat back on, I didn’t want this woman to inject me with anything! Then a nurse came back in and asked if I was having the jab. I explained that the other woman had been quite aggressive and I was just trying to understand what the problem was and whether I was supposed to be having the flu jab or not. She was friendlier and said that the other woman was a healthcare assistant and trained to just read the basic instructions on the screen.

I decided to have the shot and took off my coat. She gave the needle and it was over. I started to cry and was embarrassed so said “Look, Im sorry if I am being over sensitive”, she said that she would speak to the assistant about it all. I was really crying as I left the room. Big snot bubble weeping.

I stood in the reception in floods of tears. I know I am being over sensitive, I know that usually I wouldn’t be so upset by this, but I am in a delicate place right now, I am just out of hospital and preparing for major surgery and this did bother me. I felt really silly to be honest that I was so upset but you know that damn straw that breaks the camel’s back? Well this was mine today.

Perhaps this woman was having a bad day, maybe she didn’t know how to deal with the situation, but today really sucked and I walked out of there feeling upset, embarrassed and unsure of whether I should have even had the jab! Surely part of being a healthcare assistant means dealing with people who may be in sensitive or emotional states. I obviously annoyed her by questioning why I had been called in but she didn’t once speak kindly or apologise. She was mean and aggressive and really needs to consider how her actions affect the very people she is meant to be helping.

The NHS recommends this;

The injected flu vaccine is offered free of charge on the NHS to anyone with a serious long-term health condition. That includes these types of illnesses:

This list of conditions isn’t definitive. It’s always an issue of clinical judgement.

Your GP can assess you individually to take into account the risk of flu exacerbating any underlying illness you may have, as well as your risk of serious illness from flu itself. The vaccine should always be offered in such cases, even if you are not technically in one of the risk groups above.

Don’t be put off by my experience though, if you think you should be having the flu jab, get in touch with your GP.

On 4th November this year, I had the honour and privilege of going to Parliament with Crohns and Colitis UK to speak to MP’s and Peers about life with IBD. It was a fantastic experience that I will never forget and I hope to repeat again.

Raising awareness and being a health advocate is everything to me and my ability to share my thoughts through this blog, writing for other publications, writing my book and speaking at events all over the UK is something I am hugely passionate about. I LOVE what I do and I am so proud of my work. But going to speak to the people in power, those who run this country, who I can educate to then help thousands of their own constituents is just amazing.

I love the work of Crohns and Colitis UK and I am so proud to volunteer for them both on a local and national level and it was just a fantastic event to be part of.

I was quite unwell during the lead up to this event and on the day I was struggling with pouchitis but decided to push through as it was so important to me. I met the amazing Carrie and David Grant who are ambassadors of the charity and got to hang out with fellow IBD activists Charlotte Guinea and the Get Your Belly Out team. What was very interested and helpful was to speak to all these people about my own personal experiences and learn about theirs. Both Carrie and Charlotte also discussed how they were currently unwell and we had a good old whinge about how IBD sucks.

I spoke to many MPs from all over the country and was over the moon to hear that over 80 MPs and peers came through the doors to learn more about Crohns and Colitis Care; the newest information pack produced by CCUK to help patients understand what they have, what they are entitled to and how to get the best care.

The people I spoke to seemed genuinely interested and cared about their constituents, they asked many questions and we discussed how they can help. A big thank you to Sheffield MP Harry Harpham, who has been in touch through email and though he couldn’t attend on the day as he had previous engagements in Sheffield, sent his parliamentary researcher to find out more.

What struck me was the motivation and strength of the volunteers and ambassadors, as we talked about our current illnesses, medication and treatments, I was very aware of the sheer heroism it takes to attend these events and raise awareness when you feel so dreadfully ill. Ironically all three of us (Carrie, Charlotte and myself) all ended up back in hospital within a week of this event which gives you an idea of just how poorly we are. But when you look at these photos, it is easy to just see 3 smiling women. The reality is that we are 3 women who despite our illness, keep striving to make the world an easier place for those who follow in our health footsteps.

I hope that all those MPs and Peers really took on board what I, and other ambassadors, shared with them. I hope they learnt something and will know better how to help and support their own constituents and how to signpost them to Crohns and Colitis UK.

I know that on that day I carried in my heart the voices of all of you lot, your words of pain and struggle rang in my ears as I spoke to MPs, your concerns, your anger, your needs were voiced through my mouth and I hope I did you all proud as an advocate for all those with Crohns and Colitis.

I am a big fan of the charity Scope and have been lucky enough to work with them this year on their End The Awkward Campaign. As part of their A-Z of Sex and Disability, I was proud to be their ‘I’ for Intimacy, where I discussed the challenges faces by people who have an illness or disability that affects their body confidence and their intimate relationships.

As part of the End The Awkward campaign, they championed a campaign called Undressing Disability by Enhance the UK. This campaign was about showing some photographs of disabled people in their underwear and I was thrilled to be invited down to London to attend the launch of the exhibition at the Gherkin as well as some inspiring talks and general hanging out with awesome folk!

The event featured talks by Scope and Enhance the UK which were both informative and inspirational, and it was great to meet other advocates, campaigners, bloggers and speakers who are as passionate as I am about making a difference.

It was a great night that really inspired me to keep plodding on, keep blogging and keep making a difference, no matter how hard it becomes.

That’s me!! I am a finalist in the Blogger’s Lounge Blogger of the Year Awards in the category of Charity & Social Blogger! From many entrants, I have been shortlisted and am 1 or 5 finalists. Woo hoo!!

I am having a tough time with my health right now and so this has really boosted my spirits. I love writing and this blog is my passion, it has helped me get through the toughest few years of my life and to know that it has helped so many others just feels amazing.

People don’t like to talk about poo and embarrassing illnesses regarding bums, but I do think times are a-changing and more and more I see news articles and stories about life with IBD and many other chronic illnesses and disabilities. This can only be a good thing and I am proud to shout loudly and be the voice of those who don’t feel able to speak out. I love being The Poo Lady!

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Yep, the decision is made. This journey that started 2 years and 2 months ago when I had my colon removed and an ileostomy formed, is coming full circle and in early 2016, I will be going back under the knife and having a permanent stoma formed. They will remove my Jpouch and make an ostomy from my small intestine and I will once again, have a bag. Though, this time it will be a bag for life. (Not the Tesco kind…)

I am still in hospital recovering from this latest bout of pouchitis and this week I have had to make some tough decisions. Do we continue to fight fires and keep having medication, hospital stays, exhaustion and generally spending 20% of my day on the toilet? Or do we go back to the ileostomy.

I’ve had to be quite logical and unemotional about it all, thinking in terms of quality of life, work, family and prognosis of the jpouch. I have been listing pros and cons till the early hours of the morning, imagining life with a stoma versus life with a Jpouch and all that comes with both scenarios. I have googled my heart out and spoken to Timm, the kids and to my fabulous consultant Mr Brown.

And I have made the decision. I’m booked on the urgent list for a pouch excisionand permanent stoma. There will be no going back from this, I believe I’ll have the full on Barbie Butt! I feel relief in this decision, I know it is the right thing for me. The pouch is fantastic for some people, but for me, it isn’t working.

Only now, as I sit on the hospital ward, the lights dimmed and only the gentle hum of machines and whispers of nurses at their station, I feel very alone and very emotional.

This isn’t fair.

That’s how I feel. Like a bratty toddler. That I never signed up for a life of illness and surgeries. I don’t want to live with a bloody ostomy bag stuck to me. I don’t want to spend so much time in hospitals. I don’t want to have to make life altering decisions that seem to have two crap endings. I don’t want to worry about being a burden to my family. I don’t want to be sick.

And you know what, I’m totally allowing myself this rant. I think I’m entirely entitled to feel shit about all this. It’s ok for me to have a cry and feel sorry for myself. Because this is all not fair.

It’s not fair that I’m looking at my fourth surgery in three years. It’s not fair that I have this illness, these complications. It’s not fair that my three kids are now used to seeing me in a hospital bed. It’s not fair that my husband has the options of a wife who shits herself or a wife with an ostomy bag.

I have no positive spin today. No fun little meme with a quote by the Dalai Lama.

Nope, I have pain. Raw, emotional, angry pain. And that’s ok.

Sometimes life throws absolute crap at you, we have to deal with rubbish situations that are difficult and make you sad and angry. Sometimes shit happens. And it is completely fine to not be ok with that.

Firstly thank you so much for all the beautiful, supportive and caring messages I have received on social media, email and text. I was feeling very sorry for myself and your words really brightened my day.

So I am back in hospital, I saw Mr Brown in clinic on Tuesday and he recommended I was admitted for some IV antibiotics, some fluids and tests.

I’m still here and also on some pentasa foam and another drug to try and slow down my output. I’m still going to the loo 15+ times a day and its thoroughly exhausting.

My blood tests have actually shown that my inflammatory markers have gone down which is good, but also a little concerning that I’m still feeling crap. I’m waiting to have a pouchogram which is an X-ray test where they fill my pouch with a fluid then X-ray me to see where it goes.

I love that just when you think you’ve had the most embarrassing tests known to man, you then have to crap out X-ray fluid whilst a team takes images of you… The joys of IBD, eh?!

But anyway, I have news.

After much discussion with Timm, the kids and Mr Brown, I’ve decided that this pouch is just not for me. It’s been 20 months and 3 bouts of pouchitis, plus so much time feeling exhausted, ill and unable to cope. Going to the loo 15-20 times a day. I have concerns about the amount of drugs I take every day and the effect on my body and liver. And now the issues with my prolapse.
I was so well with my stoma. I know it’s not ideal, but life isn’t ideal now. It’s about quality of life and currently my quality of life isn’t great.

Mr Brown has put me on the list for January and so 2016 will be a new start with a new stoma.

I feel relieved in one way as I just want to be well. But in another way, I’m just done in. I am feeling pretty sorry for myself and wondering when I get a break. I’m so fucking fed up of this illness, it’s taking so much from me. It causes so much stress and makes life difficult for my family and friends.

Poor old Timm is dealing with the kids, work and home life as well as my mental rantings and emotional breakdowns. I’m so bothered about being a burden to him that I’m actually being MORE of a burden by stressing about it.

He brought the kids to see me which brightened my mood. I spoke to them about the stoma and they immediately said “do it mum!” I asked why and they said that when I had my bag, I was really well and we could do everything normally. They said my pouch means I’m always poorly and sick in bed. This makes me so sad. But firms my belief that this pouch isn’t right for me.

I know it changes some people’s lives and is perfect for some. I don’t want to put anyone off Jpouch surgery because of my experience. As much as its not good for me, I am glad I tried as otherwise I would have always wondered ‘what if’.

I was talking to a friend who has a young baby and we were discussing how tough breastfeeding can be in the early days. She was saying that she has times of thinking about stopping breastfeeding but had some great wisdom that I have been thinking about recently.

She said “I may stop, but not on a bad day. I’ll only stop on a good day and then I know it’s the right decision”

I think this is a wonderful mantra and one I am taking on board. It is all too easy to make snap decisions when times are tough, but better to stop, get through it and make that decision on a good day. Decisions made on a good day are filled with optimism and hope, they are made with a sense of calm and what is right.

Decisions made in anger, pain, sadness or frustration tend not to be the best for you, if a decision stems from pain, it may lead you to pain. I know this sounds all a bit airy fairy, but think about it, when you are in a bad mood and try and get things done, how often does it go from bad to worse? You stub your toe, you drop your tea, you lose your keys…

I am struggling at the minute, my health isn’t great and life is all a bit stressful with work, cars and family and I am having a hard time coping. I need to make some big decisions but the motto of doing it on a good day is resonating in my ears.

Some decisions are difficult and you may not know the best path to take, but I do think that making those decisions on your better day is a more positive thing than making it on your worst day.

Sometimes you may make the wrong choice but at least if you decided on a great day of happiness, you can feel it was just one of those things rather than if you made it on a bad day, you can end up feeling guilty and full of self blame.

So, along with my life motto of “If you can’t sing well, sing loud!”I am adding “do it on a good day”!

What is your motto?

Sam x

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So I still have pouchitis. For those who aren’t sure what this means, pouchitis is inflammation in the pouch that was formed from my small intestine.

“Patients with pouchitis typically present with bloody diarrhea, urgency in passing stools, or discomfort while passing stools. The loss of blood and/or dehydration resulting from the frequent stools will frequently result in nausea. Extreme cramping and pain can occur with pouchitis.” (Source: Wikipedia)

This is my third bout since my pouch was formed 19 months ago. The first two were treated quickly with antibiotics, symptoms were relieved within a couple of days of starting the meds. This time is different, I’ve had one lot of meds that did nothing, I’ve then had a pouchoscopy (a camera into the pouch) and biopsies taken. These tests show I still have pouchitis. And so now I’m on my second lot of antibiotics. I also take fluconazole whilst I’m on the antibiotics to ward off the dreaded thrush.

I’ve been on them a couple of days now and not feeling any better but I’m hoping that things will improve. I’m in pain and so exhausted!!! This teamed with my other problems are really getting me down. We have a ton of stress at the moment, house problems, family issues, car problems, work stress. Everything is getting a bit much.

But I remind myself of perspective and know that in the grand scheme of things, all is well. I have my husband and kids and some bloody wonderful friends and family around me and I’m going to my fall back Sheffield stance of “It’ll be reyt!”